Month: September 2012

Based on last post, you can see that there’s been a lot going on. Madness is not exactly conducive to sitting down and writing a book. And yet, I can type away here at Happily Ticked Off.

And writers write.

So what’s my problem?

Part of it is that writing about something in a structure format is different from spewing out my crazy ramblings offering up a quick blog post.

A bigger issue for me, though, is the increase in my kid’s tics.

It’s not that I’m so sad that I can’t form a sentence. It’s that I don’t know what sentence to write to finish the book.

Truth be told, I had really hoped this Ticnoir would have a dramatic story but a shiny happy ending: “Here’s where my life fell apart post-diagnosis… here’s where my marriage hit the skids… here is where my two big writing gigs went away… but here’s where Rex and I fall back in love and I’m content with motherhood and my $42.51/month on Ebay and all Stink’s tics are gone! Woo hoo!”

After a few years dealing with T.S., I had no real illusions that there would be a magic bullet for tics. But after all the diet and all the supplements. After all the good sleeping and trying out meds… I certainly didn’t think the tics would be worse.

And yet, they are.

And for the end of a book, that totally blows.

It’s like going to a movie about a woman who loses her high paying job and then has a hard time making her mortgage. She has a hard time feeding her kids and her husband gets sick with MS.

But then, a la It’s A Wonderful Life, the community pitches in. In the last scene of the movie she gets a ton of cash from her church and some fat kid gives her the last nickel in his piggy back. This woman not only saves her house, but has enough funding left over to re-do her kitchen. Her husband was misdiagnosed and her kids have more organic food than they know what to with! There are cheers and shouts and tears of joy! But then, in the last scene, some thug socks her over the head on the subway and steals her huge wad of cash. Her husband gets squashed by a Gremlin and she and her kids go homeless, eating 99 Cent store Mac N Cheese forever. The End.

Who wants that kind of ending? And really, if you’re going to get hit by car, wouldn’t you rather get hit by a Porsche?

I suppose, in a way, this is my apology to you: Sorry, suckers. I couldn’t fix your kid’s T.S.. You can stop reading now.

But again, and I mean this (waaaay deep down): Enter whisper: “If you can’t fix the tics… fix yourself.”

I’m trying.

I really am.

And for what it’s worth, I’m supporting you along your way.

The Bottom Line

Does everything we do to help our kids through diet and healthy choices and meds (if needed) help? Yes. I do believe it does. I believe it could be far worse without it.

The Truth

Ten years old is hard for any kid – especially kids with tics. But this is a season.

Even Better

I’m not in the emotional toilet. As I tell my blog friend, Margaret, “I am not in the bell jar.” Ring ring ring the bell! Maybe that’s the happy ending. That I’m learning to roll with life and never give up. I’m learning to… enter my other theme, “Accept the tics I cannot change, change the tics I can, and have the wisdom to know the difference.”

Hang tight, all!

* Photo of me and Topanga T when I was 4 sent by my cousin, D D. Little did I know, at that innocent age, what a ride life would be. But maybe I had the right idea back then. When times get tough, get dancing.

WARNING: Loooooong post ahead. I am not journaling these days, but I need to. Lucky for me, I have a blog to fill in the gap! Sadly for you, it’s a mouthful. You were warned.

I don’t know about you guys, but there’s a lot of change in the air around the Frazer household.

Renting a RoomWe’re in the process of bringing in a renter. She’s a lovely assistant at the kid’s school who doesn’t have a car. She’s thrilled to walk the one mile to campus each day rather than take the bus. We’re thrilled because it will give my husband something we both need so badly: Time. The kids love this lady, so to work off rent, she’ll watch the kids 10 – 20 hours a month, giving Rex and I an opportunity to breathe.

Upon hearing we’ve consolidated our livingroom/TV room into one room, turned the dining room into an office, and turned the office into a bedroom for R, most people are really shocked. We get one of two reactions:

1. You only have 3 bedrooms! Why are you doing this!?

2. I can’t believe Rex – who is so private – thinks this is a good idea!

The answers to those inquiries are quite simple:

1. We have needed to get rid of crud for years. The kids aren’t ready to transition to their own rooms yet, so why not get a little income to fix up the house before they finally separate next year?

It’s taken one month of solid work, but we’ve disposed of about 800 square feet of stuff, leaving us with more room and organization than ever before.

2. Rex is as ready as I am to take some of the pressure off, both financially and emotionally. He can’t work 60 hours a week and then always be the beacon of calm when I’m freaking out over Stink’s tics which, is less and less these days, but some weeks I’m human. Last week? Not good. I could use some adult conversation on the nights my hub works late. Also, I am ready to build out my office to get writing work again, but need a better place to create in. The renter is our answer.

Stink’s Tics

Regarding Stink, the tics are still pretty yukky. I’ve decided to go full bore and save for Brain Balance. This is the one time I will mention here that I am accepting donations for this. After I’ve saved $ for Stink, all additional income, minus a small amount I will keep as compensation for writing this blog, will fund other children and families to go to Brain Balance or get additional support in their area for tics.

Please don’t feel obligated to give me a penny. I’ll keep on writing here forever. I just figured, with so many people with less worthy causes making $ off their blog, I would finally try and create a small stream of income for something I find quite worthwhile.

Note: I am open to comments telling me I’m extremely tacky to do this when I have a husband with a decent paying job. I would not disagree. At the same time, I’ve always been quite honest that Rex and I disagree over therapy for tics. He thinks Stink is fine the way he is – which is awesome. Me? I think there’s more we can do. Rex and I have agreed to disagree that if we are going after Brain Balance, this is my project to fund. He will be more than happy to support us and cheer us on, but he is concerned with saving for college and things that will definitely be in our future, not the maybe’s of an alternative program.

House Transition

Here are some pictures of our progress with the house. Believe it or not, it has taken hours and hours to get cabinets cleaned out. The kids have cried over getting rid of old dressers and bags of plastic toys they don’t need. But in the long run, they are so relieved to have a nice space to call their room. Life, like tics, are always changing. My job isn’t to make them content with everything and spare them from yuk. My job is to give them inner tools to have peace while chaos is happening.

Here are some pics of stuff in progress

LIVING ROOM

We removed a brown couch that was blocking the window. We took out a huge armoire that was taking up space and put the piano there. We now have paths to walk around! Plus, in getting rid of the old, we had room for the new – like the lovely 100-year-old sewing machine you see in the 2nd picture.

Small Fixes: Paint and patch walls, add new photographs as Pip is no longer a new-born, and another cool seat in the corner for more entertaining.)

Dream Fix

OFFICE

The dining room used to look like this

It now looks like this:

Small Fix: Bring the big armoire that is currently storing Ebay stuff (used to be in living room) to the cabin. Bring in old office desk and use the plastic rolling carts for the time being until you can do this:

Dream Fix:

TV Room

It used to look like this

It was very crowded with the art center, the little table, the couch, the TV, the book shelves, the science center…. don’t make me go on. Now the shelves are going into the renter’s room. The old stained couch is gone. We’re building some shelves under the bar area (an un-used space) for all my dishes. The only thing in the room now is the big table and the TV.

Small fix: Take down 1980’s plastic blinds, put up toille curtains. Put a nice curtain over the corner of the TV area (as we don’t want TV in living room) and get a nice tall couch for one side of the table near window that will double as both TV viewing and eating. Build shelves under the bar and cover with a curtain. (Maybe get a nice sideboard when the shelves are moved into the renters room. Shelves not pictured here.) Paint the walls gray and get a chandelier over the center of the table.

Dream fix

RENTER’S ROOM

Here is our old work space office in transition. If you think moving computers into the kids’ shared bedroom, moving 10000 pieces of Ebay into the new “office” and hauling out 10 bags of trash was fun, you would be more wrong than many of the political rants I see on Facebook these days.

But the kid’s room is moving along! Here it is without a good paint job, and with many baskets still on the floor. Not bad for a shared space.

KIDS ROOM

I’m not sure why the last 2 pics won’t right themselves up, but it’s fine. These days life is getting comfortable with things I’m not normally comfortable with. I just know it’s all going to be okay.

Today I need to get 20 items of Ebay up today as I’m selling for other people in an attempt to not work for $7/hour retail while I write my book.

Breast Cancer

I need to make an enchilada for a friend who just had breast cancer surgery.

Leukemia

I need to find time to see my other friend, Karen, who is on her third round of chemo for leukemia.

Look how amazing she looks!

Food Shopping

Apparently kids need to eat, and so do Rex and I.

Book

At some point this week I need to write my book some more. I’ve been at a road block which I’ll talk about in the next post.

Ex Husband

My ex-husband died a few weeks ago leaving a 10 year old boy and 2 living parents. He had a random brain tumor. Uggg. We haven’t been close, but I did see him in Christmas, 2011, for a brief visit. I’m glad we caught up and mended some bridges. This was a pic he posted on Facebook with the quote “Me the ex-Mrs. Ingman, taken 19 years after our wedding.” Um, I wasn’t thrilled by that. But hey, that’s FB for you. May you rest in peace, dear Jim!

FINAL THOUGHTS

I don’t know what to say except bring on the tics, bring on the house upheaval, bring on the illnesses. We can this together.

It might be the first time in this young boy’s life he is speechless. This does not forebode well for his Clown College culmination talk where he graduates Magna Cum Loud Mouth.

Mama: You want me to talk now?

Stink: Yeah… give some more details.

Mama: Okay, well, Stink has something called Tourettes. He’s had it since he’s been 4. Basically it means he makes sounds from his mouth or body movements he can’t help. The more you ask him to stop, the more he does it.

Teacher: How does it make you feel when people ask you to stop?

Stink: They can ask all they want, because I don’t mind telling them I have tics, but I don’t like when they go on and on.

Teacher: Well, that’s nice of you, Stink. But what if they do go on and on? How does that make you feel?

Stink: Sad. But they can ask if they want.

The mom and teacher do a double take again, but that’s Stink – always worried how the other kid is going to feel. Mom is happy to have the floor, though, because it’s time to turn the train around again.

Mama: The thing is, Stink can’t help it. We all have things we can’t control or don’t like. Like me? I was tall as a kid. I hated it. And I hated people pointing it out to me. Does anyone else have something that makes them different?

10 hands shoot up in the air. Mom points to random ones.

Girl #1: I have to use a nebulizer to breathe.

Mom: That must be hard, but we still love you!

Boy #2: I have a twitch in my leg and it’s annoying!

Mom: We know all about twitches in our family, don’t we Stink?

Stink smiles, then he adds:

Stink: Mama gets nervous sometimes and goes to see a doctor to talk about it!

The little shit. So much for privacy.

The mother fields about 5 more descriptions from kids who share their innermost secrets from being a bit chubby, being born with a lazy eye, and my favorite furtive announcement: “I was born with a overbite. That’s why I wear braces – just so you know.” A few kids pat this boy’s back in solidarity.

The teacher finally calls the love session to a close.

Teacher: Okay, so we all know Stink has T.S.. If he makes sounds, he can’t help it, so we don’t have to ask anymore.

Stink:Well, you can ask… (there he goes again) because I can stop… but it’s hard.

Teacher: So what should you do if you hear Stink tic?

Girl #1: Don’t ask!

Girl #2: Ask him to stop but don’t bug him again if he says he can’t help it!

Girl #3: Move away from him if it’s driving you crazy!

Teacher: That third option isn’t really necessary, do you all think? (The class shakes their heads “no”.) I mean, we don’t want our friend to feel bad. I’d say unless you are taking a test and Stink is super loud – which is not the case – you have no reason to change seats.

Stink: But you can ask me about my tics if you want to.

Teacher: Yeah, we got that, Stink. It’s time to walk away from the board.

Stink gave his class the T.S. talk on Tuesday. His teacher – God bless her – canceled it on Friday since the kid who really needed to hear Stink wasn’t in school. I prayed his absence was a sign that the kid had left the school and I could shield my baby from mean children forever. I was glad this difficult student was once again attending class as it would be an opportunity for Stink to practice some valuable life skills in a safe setting.

My mother had a different reaction to the situation: “Take Stink out of that school and put him in a setting that is more open to differences!” Translation: Spare him this pain.

Two years ago I would have agreed with my mom – at least on a knee jerk emotional level. It breaks my heart to see my kid being teased for something he can’t help. But now that five years have passed since his original diagnosis, I couldn’t feel more certain that keeping Stink right where he is – in a public school with all the good, the bad, the ugly and the fabulous – is the best gift I can give him.

Life is fraught with trials and tribulations. If he didn’t have T.S., he’d be teased for something else. No, running away from the problem would only set him up for failure in the future when he wouldn’t possess the inner tools necessary to deal with adversity.

Call me getting old and crotchety, but our culture, despite technology, is getting dumber and dumber. We coddle more and more. Just take a look at bowling alleys. Oooooh, we can’t have the kids bowl and have their balls go into the guttter! How sad that is! They’d fee like a failure! I know! Let’s place long rubber tubing down the lanes so the balls bounce away from the gutter and knocks down pins! Yeah! Everyone gets to feel like a winner! It’s artificial and they didn’t earn it, but who cares! It’s so much easier than watching them cry. Those darn growing pains – let’s eradicate them altogether, send out holiday cards where we photo shop out their zits when they’re teenagers, and buy them clothes they can’t afford so that mean little bully in 8th grade can’t make fun of them!

T.S. is not easy, but it’s a perfect opportunity to live life on life’s terms. Those terms, correct me if I’m wrong, include:

1. Suffering. We can’t escape pain.

2.Strength: We all need to work on our gifts, not our weaknesses. (Not that ticking is a defect, but it’s outside the norm.)

3. Humor: We need to laugh at the absurdity of ridiculous situations. This can even include chuckling at the concept of allowing a nasty 9 year old boy to define the truths about who our kids are. That’s hilarious!

And so, the night before the speech, I sat him down and said, “Stink, are you ready to do this?”

Stink: “Yes, but I’m sooooo sick of talking about my tics!”

Me: (Note to self: Back off, Mama. I’m trying! I really am!) “I don’t blame you, Stink, but you have to face this head on.”

Just five minutes earlier Pip was aghast at Stink’s story about lunch. That same kid was asking about a silly band on his wrist. “You’re so immature!” he told Stink, huffing off to his Beevis and Butthead playmates who, likely, didn’t have silly bands but were pretty darn good at talking about first person shooter games, their favorite Chuckie movies and how many Coca Colas they could drink and burp out in one day. (I mean, it’s shocking these kids have no inner soul life, but I digress.)

Me: “I get that you’re over your sister telling you to find the teachers on the playground. It’s just she loves you and is worried about you.”

I take his hand in mine and look him straight in the eye.

Me: “But to your point, I don’t want to talk about your tics anymore either. However, you have them – a lot of them these days – and kids are noticing. It isn’t fun, but you need to educate people. After that, if someone still chooses to act like a turd, they can’t claim ignorance.”

Stink: “What’s ignorance?”

Me: “It means ‘not knowing something.’

Stink: “Papa is definitely not ignorant because he knows everything!”

Now how can you not laugh at that last statement? And duh… my husband knows everything. I guess we’ll have a cure for T.S. soon then! Hooray!

Tonight I had to write the letter below to Stink’s teacher. Apparently, this is the week of honest correspondence. Spineless salespeople…. ignorant gradeschoolers… at least I knew Stink’s teacher would be receptive.

From our first conversation last year in the halls – before she was even Stink’s teacher – she demonstrated not only humor and smarts but an emotional intelligence that I’d been dreaming of in an educator.

Still, those fears I had when he was diagnosed five years ago – worries that included being teased and harrassed for noises and twitches he couldn’t control – were finally being realized. It was a somber moment.

At the same time, it was liberating. Because although I wished I didn’t have to deal with this, I wasn’t scared. And my son wasn’t too upset either. Sad an annoyed? Yes. But broken? Hardly. The past five years had been spent concentating on Stink’s strength, not his weaknesses. No fourth grader was going to take him down.

So with strength (I fake it sometimes) and lack of fear (anxiety will hit later when I’m PMSing or out of Zoloft or Day 6 of my no nightly glass of vino quest) I give you the letter which all mothers of tickers worry about writing:

Hi –

So I hate to be THAT mom, but I was saying prayers with Stink tonight and he mentioned feeling sad about some kid named Mama Never Taught Me Empathy I’m a Cry For Help who always asks about his tics.Stink doesn’t care if people ask, and he gives the standard, “Oh, I have Tourettes and make tics. I can’t help it!” and that usually suffices.

But apparently this kid keeps saying, “You CAN help it. You CAN help your T.S..” He will move out of line if he’s next to Stink and say he does not want to stand next to him because of the sounds.

There’s 3 things going on in my opinion:

1. Of COURSE people are going to be annoyed sometimes. As a mom, I get annoyed myself but…

2. It’s an opportunity for kids to be more accepting of others.

3. Stink needs to educate the class on his condition. It might make his tics calm down.

Is there any way, sooner than later, my son can have the floor and just give an update to the class on what it is to have T.S..? I can get a video about it if that will help.

Or maybe Stink can talk about it in a PLC? (TRANSLATION for my blog readers: PLC stands for “Peaceful Learning Circle”. My kids go to a fabulous developmental hippy co-op amazing public charter school. They call teachers by first names. They used to have an assistant T.A. who wore mismatched socks named who sported a fro and went by “ChaChi”. I can’t make this stuff up. Now back to the letter to Stink’s teacher.)

I feel bad hitting you with all this on the 3rd week of school. I just want to nip the “social” stuff in the bud now so I can really focus on, well, getting Stink to FOCUS and be the best he can be.

Thank you –

Andrea (and Rex!)

My question for you readers: So what would you do? No, kicking some kid to Mars is not an option. Stink doesn’t want meds for his tics. He says he feels sad, but not enough for more medicine. He thinks this kid just needs to deal with it. Do you? I see both sides, honestly, but most of all, I’m happy my kid is confident in himself. Still… where do I make choices for him where his social life is at stake? You know, like being invited to a party by an ignorant dumb ass who only hangs out with ignorant dumbasses? Oh, wait…

Here are my babies at our cabin this weekend. They cracked us up by surprising us with Twin Day outfits in their suitcase. Of course they had no tooth brushes, but who cares? They’ll be old with no teeth but like each other. Let’s see if Ignoramous STOP TICKING bully boy from Stink’s class can boast that. Well, maybe the no teeth part. If he keeps it up, someone will knock his front chopper out one day. I won’t cry will fake compassion for him.

I am steaming mad tonight, and it’s not that Stink’s tics are pretty non-stop. Quite the contrary, I am really taking on my mantra: “If you can’t fix the tics, fix yourself.” I am exercising, relaxing, off the wine (in an attempt to drop 15 pounds) and just counting my blessings.

I’m mad about the response I received from an advertiser who will remain nameless. I will not reveal if this douche bag advertiser sold magic pills, e-books, supplements or therapies for tics. I will just say that they claim to stop twitches and sounds for a fee that’s more than a cup of coffee but less than a pair of Lucky Jeans. (Evasive enough? Good. Let’s continue.)

The ad promises it will work 100% and that their own kid suffered from tics and they can END! YOUR! KID’S! TICS! ALSO! It’s that easy! Wow!!!!!!!!!!!!

I wrote them and said I would do a review for them in exchange for a free product. I was upfront that I could not spend more $ on something that I wasn’t sure worked. “But if it’s all it claims to be,” I wrote, “Then I will shout it from the rooftops and spread the word throughout Facebook and the New Jersey Center for Tourette Syndrome.”

I would run a contest to get him more traffic! It would be a win-win for my son, his wallet, and nervous parents everywhere.

I received a quick response where I was asked for my site stats. I sent him a copy of them. (Believe me – I’m not exactly getting a million hits/day.)

He wrote back 24 hours later with this response. What you see is unedited. The first paragraph is in relation to my question about tic elimination.

His response

From my own experience and from feedback I get from people I would say the following numbers apply:

50% total elimination – it can take anywhere from a week (! but these are rare cases) to 3-4 months

30% significant reduction – and I mean noticeable and significant!

20% no significant change. Although many people say the kids are less hyper and calmer. And happier.

I think you would understand why i am hesitant to commit to your proposal…

Do I send you the eBook, wait for you 2-3 months and then unfortunately your case belongs to the 20% or even 30% and I get a nasty or no review?My reputation could be damaged unfairly…

YES – i know! The way the sales page appears is as if this is the miracle cure. Sorry ….. so does every other product. My website consultant suggested and created it. (the testimonials are real by the way !!!)

If you want I can have (someone) Paypal you some money so it will be a paid post and you can just review the product and mention its existence.You can also run a contest for a free copy.

I am not doubting your integrity as a writer – i would not want it any other way!All I am saying is for you to understand my situation and realize that marketing and reality are not always on the same page.

He goes on to say a few more things, then ends it with, “God Bless.”

Where my head spins off its shouldersMy thoughts

This person is willing to falsely lead frantic parents down a primrose path and then tell us that we are stupid for believing him since ads are never real. Translation: “We are complete and total frauds, but we need cash. PS: Jesus Loves You.”

My response

Hi Devil Spawn –

No problem. I totally appreciate you getting back to me.

I suppose I’m disappointed because, even if your marketing director said to do it a certain way, it’s kind of false advertising. Either it works 100% or it doesn’t. Your ad is appealing to people like me who, in desperate situations, will do anything to make their children’s lives better.

I think it would be more honorable to tell the truth: This works x amount of times and in x amount of cases. But that doesn’t sell as much product.

I don’t mean to sound high-handed. But it’s disappointing.

For the record, I would NEVER repeat an email from you or discredit you in any way. I’m not into character defamation of any kind. But I will tell my readers to be aware of ads that promote cure-alls.

I would ask you to humbly search your heart and consider revising your statements in your ads. It would add sooooo much validity to you.

Again, thanks for your honesty in your letter back. I wish you the very best.

(Note to my own readers: I am only repeating some of their email and gave no names, so I stand by my word.)

Their response

I agree !!!!In an ideal world…..

I’ll tell you what:Show me ONE ad/website/print that gives percentages and I will pay to have my site revised and rewritten!!!!

God Bless!

My response back

I do understand. I really do. But this isn’t a cleaning product – it’s placing false hope for a real disorder that affects real people. I understand that you need to make money, but there are some things where it’s more important to do the right thing. THAT’s what God blesses. It’s not a catch phrase or an email tag line.

With all due respect, you should be really ashamed of yourself.

His response back

I’ll never know. I will delete it without looking at it. I can’t waste any more time on this. As the Bible says, “Don’t throw pearl to swine.”

God Bless!!!!!!!!!!!!!!!!!!!!!!!!!!!

* This site is syndicated at The New Jersey Center for Tourette Syndrome’s blog. Come on over and meet other writers who share similar joys and struggles. Do you write and want to contribute posts? Email me at LifeHappins@Gmail.com and I’ll personally introduce you to the editor. Let’s get Happily Ticked Off and do something to support each other!